Thyroid Disorders Community
if its not my thyroid, what is it :(
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if its not my thyroid, what is it :(

Ok, so I went to my Endo. He examined me for a few minutes and told me he doesn't think it is my thyroid at all! What the heck!?!?!?! He did order a biopsy of the enlargement in my neck. I'm having it done tomorrow. And I am really scared :( Needles do not usually bother me but the thought of getting one in my neck freaks me out. I think I'm just scared in general of what's going to happen or what they are going to find.

So if it isn't my thyroid causing my textbook amount of symptoms, what could it be? My mom was thinking pituitary or something. I'm just getting frustrated at this point. I am desperate for an answer. I was so upset last week when he told he he had no idea what was going on with me. I feel like I waited for a month for nothing.
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Avatar_m_tn
Please post your thyroid test results and reference ranges so that members can better interpret and advise.
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Avatar_f_tn
Hi there...I know exactly how you feel as I was told the same thing last month. It is very frustrating when all your symptoms are textbook of thyroid probs. I have hashi's and an enlarged thyroid like you. I'm guessing you also have a nodule/s for them to be doing a biopsy (FNA?)
My first endo appointment I was told I was sub clinical hypothyroid with a TSH of just over 7. She told me that normally she wouldn't give meds until it was 10 or above?!? but because of my symptoms she started me on 75 mcg of thyroxine. After six weeks and a return visit I was told that all my results (TSH, FT3, FT4) were in normal range so because my symptoms hadn't gone (and I had a few new ones) she flat out told me "it's not your thyroid" but still says to keep taking the meds. (um hello?)
Like you I was quite upset to be told that. I have since had a barrage of blood tests for other autoimmune diseases but of course these have all come back fine.

Are you on any meds at all? Have you been tested for hashi's/graves? There are soooo many of us that are desperate for an answer and totally understand how you are feeling. Hang in there, I hope the results of your biopsy come back fine (apparently most do) If your endo won't help you may need to find one that does.

Let us know how you get on
Giules

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1372576_tn?1279899036
Sorry to join this so late, but what are your symptoms?
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1420002_tn?1286215495
Well all the original blood test levels were normal. (back from like weeks ago) But something wasn't adding up so they referred me to the Endo. The endo told me (after examining me) he was pretty sure I didn't have a disorder of the thyroid because my symptoms are:

being constantly cold
constantly tired
fatigued
mood swings
weight loss (about 10 pounds)
decreased appetite
mental fog

From what I have read (and what the Endo told me) I have symptoms of both hypo and hyper. And he says its not the thyroid because I have symptoms of both. I have been tested for so many different things I have lost track. I know I am negative for mono, diabetes, Lyme hypo/hyper.

The biopsy was for the nodules. He did 6 needles of each side of the neck. So now I am just waiting for the results. If this comes back normal then I have no idea what could be wrong with me. For the time being, I am not on any meds (I have never been on thyroid meds....just for my blood pressure) I am willing to do anything at this point to feel better special diet, meds etc.

Thank you for answering :)
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Avatar_f_tn
Seriously, do these doctors not go to medical school...This isn't rocket science.

You sound like classic Hashimoto's...Hashimoto's patients/victims can swing between hyper (weight loss) and hypo (cold, fatigue, mental fog.)

Tell him you want the following 5 blood tests run....Free T4, Free T3, TSH (keeps them happy) TgAB and TPOab.  The last 2 are the tests for the antibodies.  If the antibodies are positive you have Hashimotos.

If he refuses, find another doctor.  My family doctor is treating my thyroid.
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1420002_tn?1286215495
I am going back to my Endo Friday and by that time I will hopefully know the results of my biopsy (I think that is why he wanted me to go back anyway). I will ask about testing for Hashimotos. I know in October I am going to get a second opinion. I'm only 19 so I don't really know too much about asking about medical stuff. My mom is pretty much my advocate so she does all the medical stuff. I am trying to become my own advocate because I don't want her to worry about me so much :(
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1157646_tn?1343970728
Hi, Just been reading your post and wanted to say that if the doc refuses to run any of the 5 tests suggested in the above comment because you are too young...do NOT listen...keep demanding the tests.  Im 19 as well and was told ever since I was 16 I was to young for thyroid diseases...well, that isnt true!!  Im 19 and my thyroid is a mess!!  I was told by my doctor at the age of 16 that thyroid illness was something middle aged women suffered!  

Keep pushing for the hashi's tests along with the thyroid panel and if need be change doctors but don't listen if they say you wont have anything wrong with your thyroid because of your age...illnesses dont discriminate!!!  

As for wanting to be more of your own advocate, the best way I think is to show the doctor you need to know what is going on, if the doctor suggests a course of treatment or test - then ask why!  Dont give up until you understand and are happy with what he/she is saying.  I found that it shows the doctor even though you are only 19 you arent a "push over" and wont just go along with what they say, and that you are interested and want to be proactive in your health.
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1420002_tn?1286215495
Ok I will talk to him about that when I see him tomorrow morning. He will also be discussing my biopsy results. (well I hope he has results....its been a week)

If he can't find anything my mom is gonna ask him about testing for anemia or lead poisoning...she randomly thought that could be a factor.

Thanks for the advice!
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Avatar_m_tn
Hope you see this before your appointment with the doctor tomorrow.  As I read back over the posts, I wanted to reemphasize what JTlmom suggested.  You should request testing for the actual, biologically active thyroid hormones, which are free T3 and free T4 (not total T3 and total T4), along with TSH and also the thyroid antibodies tests, TPO ab and TG ab.  If the doctor resists, you should insist and not take no for an answer.  Remember that you are the customer.  

When results are available, please get a copy of the lab report and post results and reference ranges for each, so that members can help interpret and advise further.  The doctor is required to give you a copy upon your request.  

If you have the time, I suggest that you might better prepare for the doctor by reading this link.  In fact, you might even want to give the doctor a copy.

http://www.drkaslow.com/html/thyroid.html

You should also be aware that just having results for FT3 and FT4 and TSH anywhere within the ranges may be called normal by the doctor, but the ranges are too broad and those results may not be adequate to relieve symptoms.  Frequently we hear from members that symptom relief for them necessitated that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range.  Symptom relief should be all important, not just assuring that test results fall within the "normal" range.  
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1420002_tn?1286215495
Well the Endo told me no cancer (good thing!) but he still has no idea what my issue is. He made me get even more blood work today :( A special kind of test was ordered. A cortisol (I think) test. Where I got three tubes of blood, then they injected me with the cortisol, then 30 min later I got another tube of blood taken, then 30 mins after that I got one last tube of blood. He ordered other tests too...maybe one for Addison's disease and adrenal issues or something rare...but I can't remember.

My GP found out and called up the lab saying he didn't understand why the Endo wanted those tests done! So he is having the lab re-test for the thyroid conditions. So for now, I am back to square 1. Hopefully I will know soon enough what is wrong. Maybe just maybe my blood results will be different. It is possible something went wrong the first time the thyroid was tested...right? (it has been a few months since I originally tested for thyroid issues)

UGH I am just so frustrated and ready to give up :(
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Avatar_m_tn
It would be very informative if your would post those thyroid test results you mentioned, along with the reference ranges
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1420002_tn?1286215495
I will see if my mom has a copy of the results. She keeps track of all that...even though I'm 19. I'm not the most organized person haha. When I find them (or get a copy from the doctor) I will post them.
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